Swinging on a rock...

Today has been another rollercoaster day of hope and disappointments; of swinging between shock and rejoicing in glimmers of mercy.

We sat here, on my camp bed this evening, watching Heidi sleep, praying and counting our blessings...

We are so grateful for the fact that our baby girl is alive and kicking (literally). She is a little fighter and yet so contented, incredibly strong and yet so sweet. We are so blessed to have her. She is a little gift and has us entirely wrapped around her little finger. I know there's no such thing as a perfect baby, but I  genuinely can't think of any way she could be any more delightful... I know that God has been merciful to us in that sense. I can't imagine having to go through this with a distressed or unhappy baby... her delightful nature just makes the whole thing so bittersweet - it sort of helps and breaks your heart at the same time to see her so happy...

We have been so blessed with the care we have received. Were we in another place, or time, the disease probably wouldn't even have been picked up and might have taken her... I can't thank God enough for the NHS...

Just writing this makes me cry. Makes me cry because I realise how very, very blessed we are that she is still here... how very blessed we are that there is an 8/10 chance that these arteries will heal themselves with time, so long as no clots develop in that process...

It makes me cry because I have cried with other mother's today. A lady came into the ward and broke down beside me... I saw myself in her. The dark Wednesday I will never forget, when we thought we had a baby on the mend and found out her life was on the line. When we thought we would lose our beloved baby girl... when we realised, with heart ache, that we had unknowingly kissed goodbye to our carefree, happy life where everything seemed so perfect, when the fear overwhelmed us of how this would affect our darling baby, our other baby, ourselves as a couple...

I sat with her as she broke down and told me what they had told her. And again, I realised how blessed we are to have hope. We have hope that Heidi may be able to live a completely normal life. It is not certainty... but it is hope.

This lady had been told there was very little they could do. My heart broke for her.

I long so much to go home, to draw a close to this chapter of the nightmare. And yet I'm so afraid of it too. Being here, I know that if Heidi's arteries clot, the Doctors are seconds away... going home feels big and scary and dangerous.

And so we swing - sorrow to joy, blessings to questions, fear to hope... and yet God is steadfast and certain and unmoveable. Our rock.

I am so glad He holds us tight.

Teaching us to trust...

Thankyou, John and Catherine, for sending this to us today. It speaks for us at a time when we can't put into words how we are feeling...

Our Father - caring, loving and generous as he is - is teaching us to trust.

It's a hard, painful road... but one that is familiar to the God who holds us. He's walked it. He's with us in the fire and the flood - faithful forever and perfect in love.

He has not forgotten us.

The waiting game...

Another night behind us. Another Doctor's round. Another morning of waiting to see what will happen. Heidi had another ECG this morning, we are currently waiting for a blood test, and then she will have her second echo. We are praying that things will have improved, or at least not have gotten worst...

If they can see that she has stabilized, that the Kawasaki's has run its course and no longer proves a danger to her little body, then we may be able to come home this weekend. Coming home on a cocktail of drugs with a lot of uncertainty and a lot of question marks about the future of her coronary arteries.

The Brompton may well become a second home to us.

We ask you to pray for us that the Echo would be positive - that perhaps we might even see some first signs of things healing themselves (although that is unlikely at this early stage), we ask for prayer that Heidi's CRP levels will come down so that we can move her onto low dose Aspirin, rather than the high dose that she is on at the moment (which has its own risks), we ask for wisdom for the Doctors - we want to come home, but we don't want to come home without the assurance that it is safe for Heidi. Please pray that Ava will remain secure and resilient away from Mama and Papa - she is so strong. Pray too that this journey will only prove to strengthen our faith, our reliance on Jesus and our bond as a little family.

So God, we trust in you.

Oh God, we trust in you.

When tears are great, and comforts few

We hope in mercies ever new

We trust in you.

Smiles in the dark...

In the midst of all the heartache, this has made me smile today.

My mother-in-law's apple cake has gone viral.

Magni, you are now officially famous.

Thank you Shelley and Cason... read more here.

A new day...

How do you begin to cope with the fact that your baby's life has been on the line for the past week? How do you get your head around the fact that your once carefree life will probably never look the same again? How do you get over the guilt of abandoning one child to be with another? How do you rest when you know your precious little baby has a life-threatening heart condition?

I don't know the answer to those questions. I just don't know. But I DO know that God is with us in this. In the pit. In the mess. In the shock and the fear and the lostness. He says "I am here. I've got this"

There have been so many mercies in this nightmare. Our baby girl has probably been living with this condition unmonitored and untreated for the past week at least, and yet He has protected her. When I think of the nights I have slept easy with my baby beside me, unaware that one little clot could have spiralled our lives in a direction I can't even comprehend...

Heidi has aneurisms on her coronary artery. In places, as wide as 5mm. It is a mercy that she is still with us. It is a mercy that Doctor L, our consultant at the local hospital, when he walked out saying he wasn't going to treat her for Kawasaki's as he was sure that wasn't what it was, came back 5 minutes later saying he had walked out and an uneasiness had fallen over him - he had changed his mind. That was a God thing. Were it not for Dr L, the prognosis could have been far worse.

It is a mercy that we are here, at the Brompton with the heart experts in the UK, under the care of the consultant who wrote the book on cardiac complications in children. He eased our worse fears this morning, when we fired him with our questions; "It's bad, but I have seen much worse... there is a chance the aneurisms could heal themselves..."

It is a mercy that last night, as the tears flowed down my face, a lovely lady called Michelle came over and put her arm around me; "It does get easier," she said "the initial shock is incredibly hard, but you'll see... you'll look back on this time and be stronger for it". Her son is 11.

It is a mercy that a good friend of mine, who knows what it is to have a seriously ill child, said to me "unfortunately you are in a brave new world where you will learn to cope with things you never imagined. Take it one day at a time, and console yourself with the fact that Heidi and Ava will never remember this awful time"

Heidi lies here, kicking her little legs merrily and smiling charmingly at the passing Doctor's and Nurses. It does mess with your head somehow. This chubby little smiler doesn't fit the prognosis.

We are hopeful that God will bring healing to our baby girl. Her heart is strong, but one little blockage in her broken artery could cause a lifelong weakness. We pray that the artery will begin to heal itself in the next 6 months to a year. That is the best case scenario. It will be a long, nerve-wracking waiting game.

But in the waiting... in the heartache... in the questions... in the fear.... God is here. I KNOW that. I have felt it, tangibly, these past 48 hours in a way I have never felt it before. When my Dad and Dave's brother came to visit us last night, we went for a walk and sat down in a room on our own. We cried and prayed and and talked and sang together...

We rest on Thee, our Shield and our Defender!

We go not forth alone against the foe;

Strong in Thy strength, safe in Thy keeping tender,

We rest on Thee, and in Thy Name we go.

Strong in Thy strength, safe in Thy keeping tender,

We rest on Thee, and in Thy Name we go.

Yes, in Thy Name, O Captain of salvation!

In Thy dear Name, all other names above;
Jesus our Righteousness, our sure Foundation,
Our Prince of glory and our King of love.

Jesus our Righteousness, our sure Foundation,

Our Prince of glory and our King of love.

We go in faith, our own great weakness feeling,

And needing more each day Thy grace to know:

Yet from our hearts a song of triumph pealing,

“We rest on Thee, and in Thy Name we go.”

Yet from our hearts a song of triumph pealing,

“We rest on Thee, and in Thy Name we go.”

We rest on Thee, our Shield and our Defender!

Thine is the battle, Thine shall be the praise;

When passing through the gates of pearly splendor,

Victors, we rest with Thee, through endless days.

When passing through the gates of pearly splendor,

Victors, we rest with Thee, through endless days.

Our little fighter...

Baby girls. Sister love. Ava has been so strong and resilient through this.
I am so proud of her.

Shock

Wednesday 3.30pm
Shock. I feel like everything is spinning. I cling to the side of her cot and sob, and the next minute I am overcome by a wave of peace. Then the rollercoaster continues. Feeling physically sick, thinking I'm going to collapse. I KNOW God is here with us. He holds us tight. He will not let us go. We sit in tears and cry for our baby girl. It just hurts so much.

Wednesday 7.20pm
Our little Heidi is very sick. Please pray for her healing. We know that God is good and has his purposes, but we are hurting and would cherish your prayers. Please pray for little Heidi's heart and pray for wisdom for the Doctors. Please pray for little Ava too, as it could be a long time with an absent Mama.

Wednesday 9.30PM
We are at the Brompton. The Echo revealed that the coronary artery is inflamed in some places to 3-4 times the size it should be. The danger is obviously clotting and heart attacks. We are in total shock, but thankful to be in the best place... I have cried more tears than I knew I had in me...

Home sweet home!

We are home. Exactly two weeks since we were first admitted. Exactly one week since we were discharged for the first time. Something about Tuesdays it seems...

When I think back to life three weeks ago, it seems like a distant dream. Rose-tinted, carefree. Two beautiful healthy girls, a little baby who seemed too good to be true - sleeping through the night, barely ever crying, happy and smiley and so very contented.

And then Kawasaki's struck. And life took a turn we did not expect, shocking us to our core and throwing us into a rollercoaster ride that rocked our world. Our baby was sick... our baby potentially is sick. And that is something we are having to come to terms with.

Tomorrow afternoon we go to the Brompton to find out the effects of the disease. The next six weeks will be a rollercoaster ride of too-ing and fro-ing between hospitals, highs and lows of waiting and watching to see if anything develops on her coronary artery. We pray it won't. We long for good news.

But waiting and watching we know the One who knows what it is to suffer; who knows what it is to watch your beloved child suffer...

He brings comfort like no-one else.

For now, though, we celebrate. Our little family is reunited at last. We are home in the comfort of the familiar. Our baby is cheerful and contented on the outside, and all signs of illness have vanished.

We long for the same to be true on the inside.

Please continue to remember us in your prayers.

Waiting...

It seems that Heidi does, indeed, have Kawasaki’s disease. She received the treatment yesterday afternoon into the night and since then, her temperature has not reappeared. It is reassuring to know that we have finally found what we are dealing with, it is scary to know how long it has been left untreated.

We are hoping to get an appointment at the Brompton tomorrow, so that Heidi can have an echo done. Then we will know how much, if any, damage has been done to her little heart.

The disease can do no more harm now, but as our consultant says, the die has been cast in the 15 days up to Heidi’s treatment (ideally Kawasaki’s is treated between days 5 and 10), so we wait, with bated breath, with tears, but also with the comfort of the Saviour, to find out what damage has been done.

We pray none.

Today she seems happy and healthy, cheery and chirpy; the little girl we had before this whole experience. And I’ll admit it hurts; it does hurt to know this is all it has taken to make her better. A Doctor friend of ours raised the alarm a week and a half ago and we questioned, but she was not showing the usual symptoms and so the disease has been left for 15 days, to do what it wanted to do.

I would feel desperate, hopeless, resentful and despairing were it not for the knowledge that we are totally held in the Father’s hands. That this whole journey has a purpose. As a friend from church, who herself has known a lot of heartache, said to me today…

God is too wise to make mistakes and too loving to be unkind.

We cling to that truth as we wait.

Please pray that somehow the disease will have avoided her heart. Pray for any issues to reveal themselves quickly so we can begin the potentially long road of treatment. Pray for strength. And faith. And hope.

Diagnosis?

We are back in hospital. And this time we have a potential diagnosis. Our baby girl may have Kawasaki’s disease. We are hoping we are not too late in catching it, and that it hasn’t affected her heart yet. We are anchoring our souls to the one who holds all things in his hands, who knit her together, who loves her even more than we do.

We covet your prayers. We can feel them, physically, giving us strength. I do not know what we would do without the comfort of the Saviour. I am writing this, feeling peaceful, and knowing that he is in control.

The Lord’s my Shepherd, I shall not want

He makes me lie down in green pastures

He leads me beside still waters

He restores my soul

He leads me in paths of righteousness for his name’s sake.

Even though I walk through the valley of the shadow of death

I will fear no evil

For you are with me

Your rod and your staff, they comfort me.

Lord, I pray this prayer for ourselves in the midst of Heidi’s potential heart problems. Lord, you made our baby girl. You knit her together. I trust you. I trust that, thought I can’t get my head around it, you love her even more than we do.

Cover her with your protection. Let her little heart be yours – physically and spiritually – and give us the strength and hope that only you can give.

She is yours, Lord. She is the beautiful gift that you have given us. Help us submit to your good and perfect will. I love her with all that I am, but I trust you because you are good, faithful and ALWAYS there. Even in the valleys of life. Whatever may come, whatever journey we might be about to go on, you are there and will give us all that we need to cope through this trial.

Thank you that in our fears and anxieties, we can throw ourselves completely on your never-failing love.

Hold us tight, Lord. Hold us so tight that even when we despair, we can feel you there. We come in the name of our constant Saviour and the one who loved us enough to sacrifice himself for us - in Jesus precious name

Amen.

Reasons to be Cheerful...

I'm a day late joining with Mich's Reason's to be Cheerful, but I'm jumping in late on the bandwagon nonetheless...

I have so many reasons to be cheerful this week...

Having my little family together again...

Lovely flowers from our Church housegroup on Heidi's release from hospital...

NOT making the finalists list on the BIBs... I can genuinely say the 6 finalists are truly inspiring... I am so pleased for all of them and they truly deserve to be there!

A lovely evening painting my nails and watching "Sense and Sensibility"... nothing quite like a good Jane Austen movie...

This little lady who brings me 100 giggles every day

A happy face from this little one who was so sad when she was ill; it warms my heart every time she smiles!

A God who is good and totally in control, even when life feels out of control

Please pray for us today... we are going back to hospital for another blood test with Heidi. I'm hoping this will be the end of the whole ordeal!

Round two...?

Yesterday we had a scare. I thought the whole ordeal with Heidi's illness was over when I waltzed into hospital yesterday morning for her to receive her last dose of antibiotics. I could see as the nurse carried out Heidi's obs that she wasn't happy. My heart sank at the thought we might be taking a backwards step. Heidi's temperature was up. Again. For the first time since Sunday.

We doubted ourselves. Perhaps it was because I was feeding her and she was all hot and stuffy under the cover. We waited til she finished and tried again. 38.4 degrees. I couldn't believe it. I wanted to burst into tears.

The nurse left us alone and I just started praying. "God, I believe you can heal. Would you do a miracle?" I grabbed my phone and text a handful of our friends, asking them to get praying. I was desperate. Jesus healed lame people, he made blind people see... Surely he could do something little like bring a temperature down??

About 15 minutes later, the nurse returned. She wanted to see how Heidi's temperature was doing. I waited with bated breath... 37.2. Normal.

Wow. The nurse did a double take.

"I'll check it again in a bit, just to make sure"

The Doctor checked Heidi over. He said she looked perfectly well, her CRP levels were continuing to come down, but this spike had thrown him. He wanted the nurse to take Heidi's temperature again. I could read the communication in their eyes. If it was up, we were going to be readmitted.

37.2.

You could see they were confused. The Doc said he wanted to speak to his boss... He wasn't sure what the best course of action to take was... How could her temperature have dropped so considerably in such a short space of time?

I know how.

Thank you so much for all of your prayers. God is good and he hears our prayers. Sometimes his answer is yes. Sometimes wait. Sometimes no. On this occassion, God mercifully answered in a very immediate, practical way. We are home and I have been checking Heidi's temperature all afternoon.

Normal.

Please continue to pray for our Bubba. She's been left pretty weak by this nasty thing and looks like a little pin cushion from all the blood tests, cannulas and antibiotic jabs. I just long for her to have some respite now.

We are going under for a few days.

Lots of sleep. Lots of milk and lots of cuddles.

What I've learnt this week...

That it is possible to eat yoghurt with a fork

That there is always someone whose situation is worse than yours

That I have watched 74 of the “501 Must-See Films” (not all this week!)

That NHS tea-bags are ridiculously weak.

That a mother’s instincts can be trusted

That the NHS staff are some of the most dedicated, caring professionals I have ever met.

That even tiny babies are little fighters.

That seeing your children hurt hurts a hundred times worse than hurting yourself

That suffering people band together for encouragement.

That “pyrexial” means you have a temperature.

That the body seems to hold an endless supply of tears.

That God has blessed me with an incredible circle of friends and church family.

That my immediate family are the most sacrificial and supportive family I could ask for.

That Ava has the power to charm a room full of nurses.

That God provides you with strength to bear whatever it is you need to.

That hospital food is actually pretty good.

That even in the darkest moments, God gives comfort like no-one else can.

That three nurses talking in my room will not wake me up, but one snuffle from my baby will.

That hospital showers are cold in the afternoon.

That my husband has an incredible capacity to give and be strong.

That hospital fold-out beds are not bad for comfort.

That there is nothing a sick baby wants more than to be cuddled.

That prayer works.

That God is faithful, trustworthy, sovereign and good. I can wholeheartedly entrust even the things I hold dearest to his care.

So glad to have my little family together again!

We're going home!

I have waited with bated breath over every thermometer reading the last 24 hours… there have been too many times I have rejoiced too early at a low reading, only for her little temperature to creep back up. Heidi hasn’t had a temperature since Sunday evening now, and it is SUCH a relief to have my little munchkin back. She is not as perky as normal; I think she’s definitely been left weaker by this illness, but she is well. And that is all that matters.

I packed up my things last night. I had waited all day, not wanting more disappointment, but when her temperature read low again, I gave myself the luxury of assuming we were only going to be in for one more night. As I packed up our things, I realised that, much as I cannot WAIT to go home, this little room will always hold special significance for me. I have cried more tears here probably than anywhere else… it is here that I asked God some pretty honest questions, and its here that he answered in a very real way. I have felt his presence here. He was in it with us.

Our precious little girl is over the worst of it, and while I cannot stop myself smiling, I choke up at the realisation that this is not how the story ends for everyone. I have seen too many little shaved heads this week, seen too many parents shedding tears. We are so blessed and I am so grateful.

Our baby girl is coming home at last.

Hope and Perspective: my two friends...

Today the situation with baby Heidi remains largely unchanged. Except for one thing. We now have hope. When the Doctor's came round yesterday morning, they finally said the words we had longed to hear...

"We are starting to see some improvement. The spikes are spreading out, and they aren't as dramatic. Her CRP has also started to come down... its still very high, but its going in the right direction."

Hope changes everything. Her temperature spiked yesterday as frequently and to the same level as the day before. In yesterday's mindset, I would have been distraught. But I know now that we are on the way up, even if it doesn't really seem like it.

Hope and perspective. Two of the things that have helped me this week. The perspective came when I went down to the parent's room and got chatting to another Mum. She was in with her little girl. Her little girl had cancer. She was 5 years old and has been in remission, but it seems like the cancer is back. I swallowed back the tears, knowing how emotionally tumultuous this past week has been for us. This lady had been on the rollercoaster for two long years.

There have been no real developments over the past couple of days. Heidi remains much the same... quite cheery until the temperature hits. Even then she is so good. She doesn't complain. We are trying to  stay off the meds now... allowing her temperature to rise so that we can see exactly what her body is doing. It seems to be trying to regulate itself, but it hasn't yet been totally successful.

Heidi and I will be here until her temperature stabilizes. These past 7 days have felt long and emotionally draining. I cannot wait to go home. And yet I know, and trust, that there has been a reason for all of this. God is good. I know that.

Thank you again for all of your support. We have felt so humbled by it.

Truth...

God is good, whatever the circumstances... behind a frowning providence he hides a smiling face.

"I have learnt to be content whatever the circumstances (...) I can do all things through Him who strengthens me" Philippians 4:11, 13

Heidi still needs your prayers, but we are hopeful that she is finally on the mend...

Good news at last!

A great night following an encouraging day, and then, at 10am, the temperature struck again. So disappointing. When the Doctors came round just afterwards, they were as perplexed as ever. "She hasn't made any improvement"

I couldn't understand. She had improved. Everything in me said she was getting better - her rash was gone, the temperature spikes were getting further apart, she seemed more herself. My motherly instincts said she was starting to get better, and yet their stats said otherwise; her CRP levels were still increasing, her temperature still spiking. They agreed that the next time her temperature spiked above 38, they would do another blood culture.

I prayed and hoped that her temperature wouldn't spike. I couldn't bear the thought of any more needles being stuck into our baby girl. Her temperature sat, unwaveringly, at 37.9 all morning. I was on total tenderhooks.

After Dave and Ava left, they checked her temperature again. 38.1.

I was devastated.

She had just fallen asleep. After falling asleep and being repeatedly awoken by the pump which kept bleeping "Line occlusion" as her antibiotics were pumped around her little body, she was wrecked. I had had to work hard to get her off to sleep. She was overtired and shattered.

Not only did they want to stick more needles into Heidi. They wanted to do it now. And that meant waking her up.

When the Doctor came into the room, I broke down. Sobbing out some garble about how I didn't understand... that she had improved... that I didn't trust the tempadots (thermometers) they used... that I had just got her off to sleep and how was she supposed to get better when she couldn't rest. The Doctor was very patient with me and went through everything. I didn't like what she was saying... it went against every protective motherly instinct bone in my body. But I knew she was right.

Her bleeper bleeped and she was momentarily called out. I stood over Heidi's cot and stroked her head, crying my apology that I couldn't protect her from this, that I couldn't stop the pain, that I couldn't tell them to leave her alone. It hurt so bad.

I left the room and went down to the parent's room and sat. I called Dave in tears. I just needed someone to distract me. A few moments later my friend Kate arrived, and shortly after, my sister. It was so good just to have someone to talk to. Mercifully, the bloods were done quickly and Heidi was fairly calm.

Over the afternoon I have had a string of visitors. Exactly what I needed. Being on my own leaves me with my thoughts, and God has so used the encouragement of all of you to keep me strong. Heidi's temperature stayed down for the afternoon, but I have learned not to cling to each good thermometer reading with too much hope. It only makes the disappointment greater.

Ava and Dave arrived again around 3pm, we headed down to the playroom while the nurses watched Heidi. It was good to get out. While we were there, I heard the Doctor on the phone outside.

"That's wonderful news!" she said.

I so wished that the Doctor would say that about us. I longed for those words so much!

Within seconds she was by my side... "That was the Royal Brompton with your results..."

At long last, some good news. The CRP count was coming down at last. That meant, at long last, we had some hard and fast evidence that my motherly instinct was right. Heidi was improving. Her little body was no longer having to work hard at fighting off the illness. She told me the temperature should follow.

I asked her if I could hug her.

I have smiled for the rest of the afternoon and evening. The facts say my baby girl is getting better. I don't care how many more nights we have to stay here... as long as she's improving, I don't care. I am so very grateful. There is hope again. The bleak, confusing cloud of the last few days is showing a glimmer of sunshine through it.

As one of my favourite hymns says...

You fearful saints, fresh courage take

The  clouds that you now dread

Are rich with mercy, and will break

With blessings on your head.

So God, we trust in you

So God, we trust in you

When fears are great, and comforts few

We hope in mercies ever new

We trust in you.

Amen.

Another day...

Another day of question marks

Another day of emotions

Another day of tears

Another day of frustration

Another day of hospital

And yet it was also the day of Heidi's first giggle.

I thank God for small mercies.

Grateful...

An emotional day... this morning was the lowest. For the first time, the fear gripped me that perhaps something more sinister was going on... they were sending us for those kind of tests and checks. I locked myself in the toilets and practically howled "No God, please..." I called Dave in from school. I couldn't be on my own anymore. 

Praise God we got the all clear...
 
This afternoon, Heidi kept down her temperature. She didn't need any help keeping it down between 8.30am and 4.30pm when it spiked again. It was disappointing, but that was the longest respite so far. I am grateful for that.

I am grateful for this hospital; for the staff - the nurses, doctors and consultants who are all caring for us so well, and for the smiley lady who gives me dinner every evening and, in her strong lithuanian accent, says "Don't cry. It be OK in the end".
 
I'm grateful for a husband who dropped everything today to come in when I needed him.
 
I'm grateful for Ruth van den Broek who gave us some advice about IVs which meant Heidi didn't sob (or even cry) when she got her antibiotics tonight.... that was a breakthrough.
 
I'm grateful for my immediate family, and my church family, who are caring so well for little Ava.
 
I'm grateful to every one of you who have so supported and encouraged us with your thoughtful messages and prayers.
 
Most of all, I'm grateful to God for his sustaining power, his strength, his faithfulness and his assurance that he holds Heidi in his hands.

Much love xxx

Comfort...

I have been really struggling this morning. I have cried lots of tears. She hates the antibiotics through the IV and cries so much. She just looks up at me pleadingly as she sobs and it breaks my heart. Every time.

But here I have found comfort as I have made this prayer my own. Thankyou Vineyard Music for ministering to my soul this morning. The video's not great, but the words are comfort to my soul.

And thank you Father for your faithfulness. I trust you.

Riding the Rollercoaster...

-->

Yesterday was another difficult day. We had had a fabulous night. Heidi had slept well and had only needed paracetemol once in the night to curb her temperature. When they took her temperature 7 hours later, it was 37. I felt a flood of relief.  She was bright and chirpy and chatty and the rash had all but disappeared. We were on the home straight.

And then yesterday afternoon happened. Slowly I watched those red blotches reappear on her knees and elbows and her little face heating up. She burnt to touch. Her temperature was back up to 39.4, after some ibuprofen and a couple of hours, it had crept even higher.

I felt a wave of disappointment. I had felt such hope. She cried herself to sleep in my arms in the end… the contented and cheery nature of the morning long forgotten. When I felt her little head relax on my shoulder and laid her down I left the room and let the tears flow as I watched her through the window.

“Are you OK?” one of the nurses asked.

How do you answer that question? I lied. I answered in the truly British form “I’m fine” I couldn’t do anything else without turning into a blubbery mess.

In the afternoon Ava arrived, and for an all too short hour, I allowed myself the luxury of getting sucked into child play – the happy little squeals of a little girl delighted by the offerings of a children’s ward playroom. We drew, we made cups of tea and cooked potatoes (?!) in the kitchen and explored the delights of the sensory room. I miss her.

By the evening, Heidi seemed more herself again… I even nearly got her first giggle (but not quite) and she smiled and chattered with her ragdoll. She has fed well. That is a good sign.

The doctors are still uncertain as to what our little lady is fighting, and so it’s difficult for them to prescribe the right stuff. David has been a rock - driving backwards and forwards to hospital with everything we need, caring for Ava and just being the emotionally strong one, while trying to carry on with work as normal. My Mum, as always, has been irreplaceable. Ava is able to carry on in her own merry little world because David and my Mum give her that stability. I am so grateful to God for both of them.

The antibiotics do not seem to be working; the blood samples and 101 other samples they have taken are “not growing anything” which all points to a very nasty virus. They can’t do anything for viruses. We just have to wait it out and let Heidi’s little body rage the battle while we do everything we can to monitor her and give her respite when we can.

I have been utterly overwhelmed by the level of support we have felt through this – thank you SO much to every single one of you. I know I haven’t personally replied to everyone’s texts, Facebook messages, tweets, comments and emails, but we are so grateful to God for every single prayer, well wish, offer of help, visit and thoughtful gesture. We feel truly upheld by you all, and that is such a comfort.

I will keep you posted. Pray for good news today.

Cx

Winding little knots...

I watch you asleep in your hospital bed

All these anxious thoughts running loose in my head

Why have you had such a hard little start?

With each challenge we've faced another knot round my heart.

When I carried you, all those precautions in place,

As they warned me of all the potential complications we'd face

As you tumbled and turned inside of me

Oblivious to the fact that you should not be free

Each concern they'd raise, each worry they'd impart

Just bound you with another little knot around my heart.

And then you came, and ten weeks on

I find myself back here, though it feels so wrong.

Your downy head soft, your breathing catches

Wires all around you, I sleep only in snatches.

And yet in the heartache, I know for sure

That you're in the hands of the One who can cure

The One who loves you more, even, than me

Who died on that cross so that we could be free.

So now as I watch you, I pray that you'll know

The healer who washes you whiter than snow,

Who deals with an illness much deeper within

Than infections and diseases; He'll heal us from sin

And so I entrust you to him in this dark

As you wind your little knots

That bind you to my heart.

I love you, our little Heidi,

Get well soon.

Love Mama xxx

I'm hooking up this morning with

Update

This morning was hard. We had had a rough night with nurses disturbing us hourly to check on Heidi. She kept alarming every 20 mins and eventually they put her on oxygen. She looked so tiny and weak with all these wires everywhere. Feeding was tricky with so many wires, and I was getting so frustrated. Just after I posted this morning I stood by her cot stroking her soft, downy head in floods of tears and crying...

"Where are you God?"

I prayed. I prayed for strength. I prayed for more faith to know that he is good. And right when I felt my lowest, those forlorn little blue eyes looked up at me and broke into a smile. And I knew God was hearing me. I knew it anyway. But somehow that little smile helped me.

An hour or so later Ava arrived. A little ray of sunshine, a breath of fresh air. Blissfully oblivious of all the worry and concern over her baby sister. It re-energised me to be around her - making me cups of tea in the toy kitchen and riding on the rocking horse! And while we played, Dave sat with Heidi as she slept and re-charged those little batteries.

After a couple of hours napping we heard the words we had so longed to hear...

"Her temperature is 36.9"

Praise God. Praise Him. The temperature is still fluctuating as I write, but its not hitting the peaks it was before. The oxygen has been taken off and her rash is fading. Slowly but surely, it is as though the life is creeping back into her little body. She is feeding again. Her eyes are a bit brighter. We get the occasional smile...

Thank you ALL for your prayers and comments. Please keep us in your thoughts... we aren't through the woods yet.

My Heidi

He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.

He is my refuge.

My fortress.

My God in whom I trust.

Psalm 91 - The Bible

She just looks so small and lost.

There are wires everywhere.

I feel totally helpless.

But my God? My God holds her in his hands. There is no better place to leave her.

Please keep praying for our little Heidi. 

For a quick diagnosis. 

For her sky-high temperature to finally come down.

For strength to feed well and recover.

Thank you.

Playing Nurse...

After our late night escapade to A&E on Sunday night, we are all fairly shattered and hit the sack early last night... Playing nurse is tiring.

Little Heidi is still not great... She has this pathetic hoarse little cry. And just looks at me with these.longing eyes. Only cuddles and milk and sleep seem to make things better...

Thank you do much to all of you who hav given us well-wishes and prayers. I hope to have my bright button back very soon!

Poorly Baby...

This little lady is not very happy at the moment...

All she wanted to do yesterday was feed and sleep. She was so sad during all her wake time, pouting that bottom lip and quivering her little chin and looking at me with those big blue eyes as if to say;

"Mama... why can't you make this all better?"

My poor little lady has a sore tummy and she is so sad about it. She only smiled once yesterday. It's so horrible when you feel utterly helpless... All she wants is to be held close, so I am holding her tight and letting her know I'm here, even if that's all I can do.

I can't wait for my bright, chirpy little button to be back to her usual smily, contented self!

What do you do when your babies are ill???

Only 24 hours to go...

... And then the lines close... Eek!

I'm not going to put out a desperate plea... I genuinely am still in shock that I was shortlisted! Thankyou SO much to all who got me this far. I love writing this little blog and am very humbled that so many of you lovely people seem to like reading it and find it "inspiring".

If you do want to place a vote, you can just click on the button below!

I've been shortlisted for the BIBs "Inspire" category. Thank you SO much to all of you who nominated me... I am utterly humbled and grateful... and slightly gobsmacked! If you do like the blog and would like to vote for me in the "Inspire" category, you can do so below. Just put a tick in the box beside "Clarina's Contemplations" under the Inspire category! THANKS!

You can place your votes here.

Take a peek at what we've done this week!

Phew! It's been a busy week. We've had lots of fun and have been loving the summer weather!!!

This week we have...

Taken Heidi on her first trip to IKEA

Built a scarecrow (still need the straw to complete him!)

Watched Heidi get excited about seeing herself in the mirror for the first time

Worked on our Bug Hotel - nearly finished!

Baked Bestamor's Apfelkuchen... this is going to be featured on House of Smith's in the next couple of weeks - watch this space!

Got lots of smiles from Heidi-Hi

Worked in the garden with Nanny

Had sister fun

Cleared out Mama's Craft room

Watched our Bubba sleeping peacefully - thanks Ellie for lending us the Newborn seat - Heidi loves it!

Movie night - "Happy Feet" was on TV!

There were also a few moments we didn't catch on camera...
- Rescuing Ava from her cot - you can read about that here!
- The many tantrums - favourite phrase at the moment "I do it! I do it!" A good test of my patience!
- Fab Bible Study on Wednesday - so encouraged by you girls (you know who you are!)
- Starbucks with Kelly from Nuffnang
- Visiting Uncle Hans and Auntie Jo in their lovely new house
- Bike rides!!

A jam-packed week! But we had lots of reasons to be cheerful as you can see!

I've been shortlisted for the BIBs "Inspire" category. Thank you SO much to all of you who nominated me... I am utterly humbled and grateful... and slightly gobsmacked! If you do like the blog and would like to vote for me in the "Inspire" category, you can do so below. Just put a tick in the box beside "Clarina's Contemplations" under the Inspire category! THANKS!

You can place your votes here.